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World ME Day ~ 12th May, 2023

Voices of ME

Here ANZMES shares community experiences of what it is like to live with PEM and how it has impacted daily life. We hope these personal stories provide some insight into the realities of ME/CFS and the importance of awareness and support for those living with this debilitating condition.

What is ME / CFS?

Myalgic Encephalomyelitis (ME) / Chronic Fatigue Syndrome (CFS) is a disease characterised by profound fatigue, sleep abnormalities, pain, and other symptoms that are made worse by exertion. On World ME Day we join with other agencies around to world to bring recognition to ME/CFS as a condition that is incredibly disabling.  However, in New Zealand, it is not recognised as a disability, and is not funded for extra support within the health system.  It is a serious, long-term illness that affects multiple systems within the body.  There is no cure and treatment is only via long-term management of the symptoms.  People living with ME/CFS are often on a scale of functionality, ranging from very severe (10%), who are often limited to their rooms/beds, to 70% being moderately affected, no longer able to work or be active within their communities, to 20% who can maintain part-time or even full-time employment. However, this also comes at a cost, which their lives revolve around working and resting.

In New Zealand approximately 25,000 live with ME/CFS and another 20,000 with long-term Long COVID.

People with ME/CFS are often referred to as the ‘missing’. Because they are often missing from work, the community and family events.   They are often having to manage their limited energy to very few events they can attend and even know that attending these will come at a cost for the few days following.  People often don’t understand how unwell people with ME/CFS are, because when you do see them they may not ‘look’ unwell. But what is hard to understand is the sacrifices they have had to make to be out of their homes to see you today.

May 12 honors the birthday of Florence Nightingale, founder of modern nursing. In 1860, she established the Nightingale Training School, despite being virtually bedridden with an illness resembling ME/CFS or fibromyalgia.


Explaining PEM

Post Exertional Malaise (PEM) is the worsening of symptoms following any exertion, with symptoms typically getting worse 12 to 48 hours after the activity.  It can last for days or even weeks.

Please listen to our member’s experiences…


Who is also supporting World ME Day

A global network of ME organisations.

All of the World ME Alliance members share a belief that the challenges in ME are worldwide, and the solutions must be too. We join ME Alliance as an ANZMES affiliate and believe we can be more effective and efficient by sharing our experiences globally and speaking with one voice.


Members sharing what PEM is like for them, and how they manage it.

Please consider supporting the community groups that support people with ME/CFS and Long COVID

Please donate today.

CCI Support

Providing resources and support for those in the New Zealand community with ME/CFS, Post Viral Syndrome and Long COVID

2022 World ME Day

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